Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Friday, October 19, 2012

I am Off to a Conference

I am heading to Washington DC today. I am giving a short presentation about the Carter Case. My focus will be on the larger ramification of a recent ruling in British Columbia. The meeting is organized by the American Society of Bioethics and Humanities. The ASBH has been kind enough to waive registration fee as it was way past my budget. I have never attended this event and am very curious about the papers to be presented and the way in which bioethicists interact. Perhaps I will be spending some time at the bar--I know this is where the real action takes place when anthropologists get together.

Below is my presentation:

Gloria Taylor had
ALS, an undoubtedly devastating condition.As Taylor lost the ability to move her body she told the press “I simply
cannot understand why the law holds the able-bodied who are terminally ill are
allowed to shoot themselves when they have had enough because they are able to
hold a gun steady, but because my illness affects my ability to move and
control my body, I cannot be allowed compassionate help to allow me to commit
an equivalent act using lethal medication”.Taylor is not the first person with a disability to make this
argument.In 1990 a Georgia court ruled that
Larry MacAfee, a 38 year old quadriplegic, who was not terminally ill had the
right to disconnect himself from his respirator and die. David Rivlin, also a
quadriplegic, sought court intervention in his desire to die at approximately
the same time. Unlike MacAfee, who changed his mind, Rivlin utilized court
sanctioned assisted suicide. More recently in 2010 Dan Crews expressed a desire
to die rather than be forced into a nursing home. In 2011 another quadriplegic,
Christina Symanski, legally starved herself to death. The legal arguments these
men and women utilized were compelling. As we have heard, Taylor argued that
the provisions of the Criminal Code that prevented her from receiving
assistance were inconsistent with the Canadian Charter of Rights and Freedoms
that award all citizens the rights to life, liberty, personal security and
equality.

I would argue that
the legal arguments presented by those people with a disability that express a
desire to die share one larger and troubling cultural response: wide spread
social support. These men and women are applauded in their effort to die. These
people are brave! We are eager to help
these people in part because society celebrates and values personal autonomy
and dignity. This is hardly an insightful observation. But it does beg the
question—why do we support people with a disability that want to die? To me,
the social support people with a disability receive in their effort to die via
assisted suicide reveals a deeply ingrained stereotype that is not questioned. Here
I refer to the fact we consistently fail to provide the necessary social
supports that would empower people like Carter, MacAfee, Rivlin and Symanksi to
live rich, full and productive lives.Rather
than discussing this failure the media and the court sympathetically nod their
collective heads. We accept it as a given that no one would want to lose their
dignity and autonomy.Bluntly put, one
is better off dead than disabled—a phrase that is used as a rally cry for
disability rights activists who proudly proclaim nothing about us without us.

Of course few
actually state a person with a severe disability is better off dead. Instead we praise Justice Lynn Smith who
relied on a host of scholars and experts from around the globe in rendering her
opinion. For example, Peter Singer praised Smith and her decision in the Carter
case noting it “could serve as a textbook on the facts, law, and ethics of
assistance in dying” (Singer July 16, 20012).Singer and others correctly observe Smith’s decision focused on at risk
populations—the elderly and disabled—and concluded “the empirical evidence
gathered in two jurisdictions does not support the hypothesis that physician
assisted death has imposed a particular risk to socially vulnerable
populations”. I could not disagree anymore. I also reject Smith’s conclusion
that it is possible to design a system that permits assisted suicide and
protects vulnerable populations. I object on two grounds: first, assisted
suicide in a clinical setting will not be perceived as a criminal act. It will
be thought of as an act of mercy. No doctor or health care professional will
ever be prosecuted for assisting a person with a disability in his or her
effort to die. Second, in Canada and the United States the larger bias against
people with a disability carriers over and into the judicial realm. Disability
theorists such as Lenny Davis (2002) have argued disabled plaintiffs are seen
as narsisstic. The theory of narcissism as used by Davis reveals a central flaw
of the disability rights movement: the primary problem people with a disability
encounter is not a given bodily deficit, in the Carter case the inability to end
one’s life, but rather society and the courts refusal to negotiate difference. This refusal on the part of “normates” to use
Rosemarie Garland-Thomsen’s awkward phrase makes requests by people like Taylor
appear to be reasonable and establishes a double standard in terms of health
care and end of life issues.

Let me address my second point and the theory
of narcissism. Before Taylor entered court it was assumed disability,
especially one as severe as ALS, is a personal tragedy. Carter’s desire to die with
or without assistance was perceived to be a reasonable response to her
condition. This leap of logic is based on a very narrow definition of autonomy.
Not surprisingly, the empirical evidence the court sought, specifically that the
lives of people with a disability were less valued and at risk, was found to be
lacking. I would counter how do you measure the value of a life and how do we
define autonomy? Do we use the utilitarian logic of Peter Singer or address the
literature produced by disability studies scholars who seek to broaden our
understanding of life with a body well outside the norm? Smith correctly found
that when dealing with end of life issues such as assisted suicide and
withholding life support “a bright-line ethical distinction” was elusive. In part an ethical distinction to borrow
Smith’s words was elusive because there is a societal double standard in the
way people with and without a disability are treated.This double standard is based on a narrow
perception of autonomy and calls into question why some people with a
disability like Taylor want to die.Here
I think the statistics from Oregon’s Death with Dignity Act enacted in 1997 are
revealing. Since 1997, 935 people have had death With Dignity Act prescriptions
written and 596 people have died from ingesting the lethal medication. The most
common end of life concerns have remained consistent, foremost among them:
decreasing ability to participate in activities that made life enjoyable, loss
of autonomy, loss of dignity, losing control of bodily functions, burden on
family and friends, inadequate pain control, and the financial implications of
treatment.

I am not
terminally ill. Yet as a person with a disability I have felt and experienced
each and every item listed. I cannot walk and have as a result lost a degree of
my autonomy. There are activities I once enjoyed that I can no longer do that
made my life enjoyable.I have lost some
dignity in the eyes of others. I have tenuous control of many bodily functions.
I worry about being a burden to my son and extended family. I worry about the financial
implications of my health care especially since I sit on a wheelchair cushion
with a short life span that costs $500 and is not covered by insurance.I have experienced severe pain that made me
wish I were dead. Yet here I am deeply perplexed. Why is my existence and that
of other people with a disability so easily called into question? Why does a
request to die such as Taylor’s garner so much attention while budgets for
social supports are slashed nation wide, cuts that are largely ignored?

I would contend that
autonomy, however we define it, is fleeting, its loss hardly a tragedy. Thus I
believe discussions about whether Taylor had the legal right to end her life
with assistance is a smoke-screen that obscures the humanity of people with a
disability. We need to keep our attention squarely focused on who wants to
avail themselves of assisted suicide and why. The answer to me is obvious:
people choose to die because they feel their life has no value. And whose lives
do we not value--my crippled body, the elderly, terminally ill and those born
with severe cognitive and physical disabilities that are deemed “incompatible
with life”.This calls into question how
we define humanity. Do not be swayed by emotion. Let’s enter into a serious debate
that is devoid of compassion.This
brings me back to the first point I raised—ending the life of a person with a
disability, the elderly or terminally ill is unlikely to ever be considered a
criminal act. It will be perceived as an
act of mercy, a compassionate and self less gesture on part of a physician.
This thought keeps me up at night and makes fear accessing the health care
system.

Earlier this year
I wrote an essay about a chilling experience I had in the Hastings Center
Report that I think calls into question the inherent dangers associated with
assisted suicide.I do not have the time
to detail what happened but suffice it to say what took place was a microcosm
of a much larger social problem. Simply put, my disabled body is not normal. Health care
systems are well equipped to deal with normal bodies. Efficient protocols exist
within institutions, and the presence of a disabled body creates havoc. Before
I utter one word or am examined by a physician, it is obvious that my presence
is a problem. Sitting in my wheelchair, I am a living symbol of all that can go
wrong with a body and of the limits of medical science to correct it. As a
result it is all too easy to consider people with disabilities as the “other”.
In the words of the noted anthropologist Robert Murphy we people with a
disability are “the living symbol of failure, frailty, and emasculation, a
counterpoint to normality” (Murphy 1990:1-2). This sort of symbolism is difficult to
empirically demonstrate exists for Justice Smith and proponents of assisted
suicide legislation. What I can tell you is that when I see a person with a
disability I consider their bodily and cognitive deficits not relevant. I see a
person that has adapted and survived a hostile social environment.I do not see an objectionable body but rather
a person that has thrived and if people working within the health care industry
were smart they would listen to what people with a disability have to say.

9 comments:

Safe travels! Thanks for posting this every well articulated presentation!

Just stumbled on your blog; I'm a physical therapist in CA, and thought I was fairly up-to-speed on disability advocacy issues for a more-or-less able-bodied person, but I'd never considered this dark side of assisted suicide initiatives until I talked recently with a friend who is working to defeat Question 2 on the Massachusetts ballot this November, through secondthoughts.org. He, and you, are chillingly correct. It's ironic how an initiative that is, on its surface, motivated by compassion has the potential to give teeth to some of our society's least compassionate biases.

I have worked in a hospice setting, and I still feel that our attempts to impose some moral-absolute line between palliative care vs. the overt hastening of death result in unnecessary and sometimes obscene suffering. My first impulse to support assisted suicide initiatives came from that place.

But I have also seen how insidiously the uninformed value judgments of decision-makers in the health care system can play out in the form of stunning inequities in the standard of care. Every setting I've ever worked in has lent its own examples of how subconscious biases get amplified and unleashed, while those who harbor those biases go about their professional lives fully believing that they've been fair and objective.

I'm curious to hear whether presenting to the bioethicists turns out to be a preaching-to-the-choir experience, or whether your perspective is a new one to them.

Lynn, I have always maintained that assisted suicide at first glance makes sense. I do not want people to suffer at the end if their life. But this is not why people choose assisted suicide. People opt for suicide because they believe their life has no value. This is directly tied to autonomy and dignity. Bioethicists as a group are in favor of assisted suicide. While no monolithic entity "bioethicist" exists it is my belief most people in the field endorse assisted suicide. I would also say there is a great deal of animosity on the part of bioethicists directed at people such as myself committed to disability rights. It is my belief bioethicists consider disability studies to be an inferior, politically driven field of study. Bioethicists pride themselves on being logical and apolitical. In short, I was not at all preaching to the choir at the ASBH. Secondthoughts has done a fabulous job and John Kelly is an impressive man. He is articulate and comes across well when interviewed.

I suppose it's a field for people who prefer the neatness of philosophical abstraction (how many angels can dance on the head of a stem cell?) to the excruciating messiness of human society. But when the rubber meets the road, it's the beliefs that screwed-up humans carry around that play out, not the lofty philosophical principles of the ivory tower. Sounds like at least some of them didn't appreciate your smudging their ivory with the sticky elbow grease of social justice. But then, at least some element within their leadership was enlightened enough to sponsor your attendance, which seems a hopeful sign. I hope your words made an impact, and hope you're not too singed around the edges from the reaction :-)

Lynn, I hate to make sweeping characterizations when it comes to bioethicists. At one end you have a scholar like Peter Singer and on the other end you have Eric Parens. These two men could not have a more different outlook on life and theory. I would contend the best bioethicists are drawn to the inevitable conundrums the medical sciences create. I honestly do not know how my talk was received. Questions were critical but polite. A few had statements of support. In a few months i will have an essay out about the divide between bioethicists and disability rights. I will be sure to post a blurb here so keep reading. Delighted to have a PT comment. You work in a field that has enhanced my life.

Thanks :-) True, every field spans a range that can't be captured by sweeping generalizations, most certainly including mine. And the representatives of every field need their cages rattled and dominant paradigms subverted from time to time, no matter how admirable their collective intentions.

I worked in a leadership role in a major SCI rehab center for several years, not only treating individual clients but also managing and training other therapists. We all saw ourselves as staunch supporters of and advocates for the clients we served. But what did I find out when I moved on to an orthopedic and pain-management oriented setting? I discovered that I was learning to troubleshoot and correct all sorts of pain problems that looked strangely familiar. And I was struck by the realization that when a non-disabled client complains of pain, our assumption is that this ought to be fixed; whereas when a client with a disability reports pain, we're all too willing to bundle it with the disability and accept it as "going with the territory" without providing the same standard of care. It's not ill-intention; it's specialization leading to different mindsets and skill-sets. But it's still inequity. I'm sure that a disability advocate approaching our SCI treatment team and hinting that we were shortchanging our clients as the result of biases about disability would not have been well received. But he/she would not strictly have been wrong, either. It's pretty hard to run out of hidden assumptions that have harmful consequences.

And with that, I shall cease and desist with the blog-bombing. (If photo-bombing is a thing, then rambling on someone else's blog must be the equivalent, right?) Will keep following, though!

Lynn, I like to engage others--especially when a respected person and I disagree. So I agree we need to have our cages rattled once in a while as it liberates us from preconceived ideas and beliefs. I know of no rehab center that includes any discussion or inclusion of a disability rights perspective. I have no idea how such a collaboration could work. I am afraid a disability rights perspective would be dismissed instantly in the rehab world. Your point about pain was interesting. I saw a orthopedic guy years ago as I had pain in my shoulders. HE suggested cortisone injections. I went to library and in four hours figured out to relieve pain I should strengthen the entire joint. I did so via skiing, paddling and biking. The MD I saw just assumed pain was inevitable. He refused to think beyond his knowledge base.

Rehab centers are certainly interesting places, with politics and power struggles constantly churning, usually having little to do with the people for whom the whole enterprise ostensibly exists. When I was in my middle management gig, all of us "PT II's" had to attend regular meetings run by the "PT III's" The most memorable such meeting involved a PT III drawing a big line across a flip chart, marking one end as "staff" and the other end as "management." Then she made each of us walk up and put our own mark on the line, designating where we felt our allegiance fell between the two. (Guess where she subsequently explained that we should have put our marks?) It's probably good that I was speechless, because I doubt that either "Are you F***ING KIDDING me?" or "Excuse me, where are the PATIENTS on this chart?" were desired responses.

As far as introducing more of a disability rights perspective... this would require a painful process of exposing the cognitive dissonance that lives (in part as a survival mechanism) in the heads of the staff. There's this unquestioned conviction that we sincerely want our patients to go out into the world capable and empowered. But it doesn't take a whole lot of self-advocacy coming from a patient *inside* the rehab setting to trigger the "WHO DO YOU THINK YOU ARE?!" reflex. Maybe it's in the Patient Handbook somewhere that empowerment begins at discharge :-)

There's also the issue that not every newly-injured person feels quite ready to feel solidarity with the disability community as a whole, whether from a civil rights perspective or otherwise. However, I can see it being possible to create more of a culture of awareness of civil rights in general, which could form the basis for introducing discussion of disability rights in specific. And meanwhile, the more general discussion could be extremely productive in addressing inequities in how people are treated as patients, based on so many factors. I saw plenty of very troubling differences in the treatment people received, based on - you name it - race, culture, gender, body weight, age. Level of injury even - it was pretty blatant how dismissive many staff were of any emotional distress on the part of people with lower-level injuries. It was like, "Oh, get over yourself, you're only a para." Then there was the neurosurgeon who would fawn and pose for pictures with his "success stories" who were up in the parallel bars in the gym, right in front of the complete quads on whom he'd also operated, but whom he never acknowledged. When you put it all together, the combined unnecessary indignities that people put up with as part of the inpatient experience can't really be seen as setting the stage for going out into the world ready to expect and/or demand respect and fair treatment.

But anyway. As for your orthopedic surgeon experience... it's more than likely that disability increases the odds of having an experience like that, but I can also say that I have heard a gazillion versions of the "he just wanted to give me a shot" story, from people of all abilities. Much of it just stems from the "If all you have is a hammer, everything looks like a nail" principle. Some of it comes from lack of insight into the particular ergonomics of being a wheelchair user, but then, other people with specialized ergonomics (musicians, athletes, etc) experience that same insight gap. I just don't think surgeons, with rare exceptions, can be expected to be much help with finding functional rehab solutions. In my experience, PM&R docs who are also osteopaths with training in osteopathic manual techniques tend to have the best capacity for interdisciplinary troubleshooting that takes both the biomechanical and the functional into account.

What really strikes me, though, is that many injuries that put people into SCI (and/or TBI) rehab are really not all that different from the injuries of people who suffered similar mishaps but managed to dodge the bullet of neurological damage. If you look at two people who survived similar car accidents, for example, the one who isn't paralyzed is likely to have pain and to be treated for that pain, with a goal of restoring a pain-free state. The one who is paralyzed is thrown into a whirlwind of specialized teaching of adaptive techniques, and the pain gets lost in the shuffle and treated like just another unfortunate facet of the disability. In retrospect, I feel as if there should be orthopedic manual therapy specialists doing consults with every rehab patient. Their primary therapists aren't trained for it; they're usually still scrambling to learn the neuro rehab side of their knowledge base. Both the patients and the therapists need more resources. But then, nothing in the healthcare system ever seems to move in the direction of *more* resources, does it?